#10 The Immortal Life of Henrietta Lacks

In American criminal law, there is a doctrine called “the fruit of the poisonous tree.” In the 1950s, it was at the core of Fourth Amendment jurisprudence: the idea that evidence, even very good evidence, if obtained through a violation of a suspect’s rights against warrantless searches and seizures, is poisonous to ordered liberty, and cannot be used against him. The doctrine is much in decline nowadays; when it comes to catching a murderer, the law sometimes finds that two wrongs can make a right.

It is not only the law that has poisonous trees. In the 1950s, when American’s lawmen were weathering a period of judicial idealism, its doctors and researchers were a bit more lax. If they needed something to experiment on – say, a patient’s tumor, or even a patient – they did not stoop to ask permission. The result is that many of the discoveries that make our lives longer, safer, and more pleasant emerged from a complete indifference to consent.

Rebecca Skloot’s The Immortal Life of Henrietta Lacks tells to the story of one of these discoveries: the HeLa cell line, the world’s first immortal cell culture. This cell line has been and still is used in countless experiments, and was instrumental in the development and deployment of the polio vaccine. It also costs scientists millions of dollars annually. HeLa cells routinely contaminate samples of other things. Scientists in the 1970s announced amazing discoveries with regard to different types of cell tissue, only to learn that they’d been experimenting on HeLa the whole time.
But where did HeLa come from? Building largely on first-person interviews , Skloot fills out a story that had only been traced in a few short articles, mostly in medical journals. In 1951, Henrietta Lacks went to Johns Hopkins hospital in Baltimore, complaining of a “knot” inside her. She and her family had farmed tobacco in Virginia for generations, first as slaves, then as sharecroppers. Many of them, along with Henrietta and her husband, moved to Baltimore in the 1940s, for jobs in the Sparrows Point steel mill. When she went to Johns Hopkins, Henrietta had just given birth to her fifth child, a boy. Another girl was still an infant; yet another was committed to a state hospital, with a diagnosis of epilepsy.

Doctors were at first not overly concerned about her diagnosis: cervical cancer in situ. However, the diagnosis was wrong: she did have cervical cancer, but it was invasive and incurable. She died within months of her first visit to the hospital, just after her 31st birthday. Unbeknownst to her and her children, however, her doctor had taken a sample of her tumor on that first visit and sent it off to a researcher who was trying to perfect cell culture. Six months later, after her death, doctors persuaded her husband to agree to an autopsy, leading him to believe that it could help prevent his children from suffering a similar death. Skloot recounts the story, as told to her, of the lab assistant that first cultured HeLa cells from the biopsy taken on Henrietta Lacks’ first visit to the hospital:

Mary stood beside Wilbur, waiting as he sewed Henrietta’s abdomen closed. She wanted to run out of the morgue and back to the lab, but instead, she stared at Henrietta’s arms and legs – anything to avoid looking into her lifeless eyes. Then Mary’s gaze fell on Henrietta’s feet, and she gasped: Henrietta’s toenails were covered in chipped bright red polish.

“When I saw those toenails,” Mary told me years later, “I nearly fainted. I thought, Oh jeez, she’s a real person. I started imagining her sitting in her bathroom painting those toenails, and it hit me for the first time that those cells we’d been working with all this time and sending all over the world, they came from a live woman. I’d never thought of it that way.

Henrietta Lack’s cancerous cells were the first to survive in culture beyond a few days. And then they kept right on dividing. They are still dividing. They never died. Skloot ‘s book tells their story, and more importantly, the story of Henrietta and the family she left behind. It tells how her children did not learn about her cells until decades after her death, when they were grown and had children of their own. Their mother’s death had deprived them of an advocate they sorely needed while growing up; to learn that she was in some way still alive and being experimented on, was a second loss and violation. And more violations were to occur: in the 1970s, researchers seeking to understand and combat HeLa contamination approached the family and had them donate blood for further cell culture experiments. The family thought it was being done to test them for the cancer that killed their mother.

This sort of treatment, along with partial and error-ridden news articles that surfaced from time to time, misidentifying Henrietta Lacks as Helen Lane, or mixing up family members’ names and other details, left the family tired and suspicious. Skloot is keenly aware, throughout the book, of how much Henrietta Lacks’ family has been hurt by outsiders – predominantly educated, prominently white – who sailed in for a piece of the Lacks’ puzzle, and left without giving anything in return, not even an explanation. Skloot gained their confidence only slowly, and part of learning their story was allowing them to tell it – faithfully recounting their conversations and reactions both to her and the fruits of her research – but becoming part of it. In doing so, Skloot avoids becoming just another outsider; the book is richer for her attentive, humanistic focus on the relationships between the Lackses, and their alternating suspicion and acceptance of her. At all times, the book gives pride of place to Lacks and her family, letting them drive and shape the story. Here, Skloot recounts the conversation in which Deborah Lacks, Henrietta’s daughter, finally agreed to talk with Skloot about her mother, almost a year after Skloot first contacted her:

[T]en months after our first conversation, Deborah called me. When I answered the phone, she yelled, “Fine, I’ll talk to you!” She didn’t say who she was and didn’t need to. “If I’m gonna do this, you got to promise me some things,” she said. “First, if my mother is so famous in science history, you got to tell everybody to get her name right. She ain’t no Helen Lane. And second, everybody always say Henrietta Lacks had four children. That ain’t right, she had five children. My sister died and there’s no leavin her out of the story. I know you gotta tell all the Lacks story and there’ll be good and bad in that cause of my brothers. You gonna learn all that, I don’t care. The thing I care about is, you gotta find out what happened to my mother and sister, cause I need to know.”

And Skloot gets into it, taking long road trips with Deborah, visiting Henrietta’s relatives in Virginia, meeting all of the Lackses and becoming treated both as an usurper and the possible key to shifting a load the family has borne for decades. Skloot also traces the history of the medical cultures and conditions that led to Henrietta Lacks’ unwitting donation of cells, and place in medical history. As Skloot describes, the scientists who took Henrietta Lacks’ cells and the others, a generation later, who took blood samples from her children were not rapacious or cruel. They were simply thoughtless. When Henrietta Lacks was being treated, the idea of informed consent was in its infancy. Instead, doctors believed in the “benevolent deception” of their patients.

A generation later, serene in their own education, the doctors and researchers who experimented on Henrietta Lacks’ family could not even conceive that her sons and daughters did not know that cervical cancer can’t be inherited; that their mother’s cells were contaminating cultures all over the world, and that the identification of specific genes and other markers from her family’s DNA would better enable the testing of cultures for contamination. They didn’t bother to ask, so they didn’t find out that the family knew nothing of this; that every news item regarding her cells made them think their mother was out there, alive, being cloned, being experimented on, being tortured.

At bottom, this book is not just about medical history; it is not just about science, or even just about Henrietta Lacks. It is about telling the truth. And in doing it, it does not trample on the right of Henrietta Lacks’ family to tell their own story. The Immortal Life of Henrietta Lacks owns the many good and many terrible things that happen when we forget that each individual has their own story, their own dignity, and their own rights. It makes a poisonous tree a little less poisonous. And it is amazing.

___Maureen Thorson is the author of three chapbooks: “Twenty Questions for the Drunken Sailor,” (flynpyntar/dusie press 2009), “Mayport” (Poetry Society of America 2006) and “Novelty Act” (Ugly Duckling Presse 2004). She lives in Washington, D.C., where she co-curates the In Your Ear reading series at the DC Arts Center and runs Big Game Books, the tiniest press in the world.

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